Christine Bechtel, Lygeia Ricciardi, Dave deBronkart, Casey Quinlan, and Donna Cryer published an article in Health Affairs this week: “Why Aren’t More Patients Electronically Accessing Their Medical Records (Yet)?” Please click through and read it — it’s open access.
Being a health geek, I read footnotes and every link in this article is worth your time. Bechtel et al are responding to an intriguing study by Sunny C. Lin, Courtney R. Lyles, Urmimala Sarkar, and Julia Adler-Milstein showing just 10% of patients with online access to their records logged in & used it. Sadly the full article is behind the Health Affairs paywall, but here’s the abstract.
Another study cited is an oldie but goodie from the National Partnership for Women & Families (PDF). A key quote:
“[P]rovider use of health information technology during patient encounters is a teachable moment that provides the kind of context necessary for understanding health IT’s value and encouraging use of this information outside of the context of a provider encounter.”“Engaging Patients and Families: How Consumers Value and Use Health IT” (2014)
Here’s a question: Have YOU accessed your medical record online? You might even ask, in return: Why should you? Why should ANYONE care about health data access and interoperability? Here’s my official answer (meaning, the one I would give on stage as the former CTO at HHS and an advocate for patient access to data).
Confession: It was only in the past week that I personally, for the first time, accessed my child’s medical record. And I’ve never accessed my own. I’ve never talked about it publicly because it’s a humble brag or, worse, tempting the Fates to strike me down with something that requires data access and interoperability.
A commenter on the Health Affairs article throws this in the authors’ faces: “Unless you are a patient with complex medical conditions, seeing multiple providers (like E-patient Dave) there simply isn’t much of a need for you to mess with this data on a regular basis.” (Don’t miss Dave’s polite but pointed response.)
I do have a kid with a complex medical condition. And yet I never “messed with data” because there was a barrier to entry (I had to physically be at Johns Hopkins to get the first-time access code) and no provider had ever made a compelling case that it would make a difference (and yet it did).
My kid’s complex food allergy history (including a LOT of early anaphylaxis) has meant that we cherish stability. Maybe we got lulled into a steady-as-she-goes approach and didn’t want to dig, analyze, or push. We were doves, not hawks. But don’t mistake that for complacence or inattention.
I keep up with the latest food allergy research. I attend conferences. I tap into peer health advice both locally AND through a worldwide network of allergists and parents. We drive from DC to Baltimore to Johns Hopkins for my kid’s care. What I’m saying is: Do not make health data access a litmus test for engagement.
What changed? Why did I finally get access?
- My kid’s test results indicated that change was afoot and he could challenge some old enemies (scaled fish and green peas)
- Expert peers urged seeking a second opinion (for which I will need all his test results in one place)
- We were on site at Hopkins last week (a requirement to get a first log-in link to MyChart)
I’m not going to second-guess myself (on here anyway) but maybe if we had been more active, including getting health data access, we could have challenged cod, tilapia, tuna, and green peas earlier. We would not have had to send back his meal last month when the rice came with peas. He could have eaten Texas barbecue (Worcestershire sauce contains fish).
Our allergist had been encouraging the tuna challenge for years, by the way, but I wasn’t ready. Seeing my baby blow up like puffer fish when he ate salmon was traumatic. Fifteen years later, I was ready, thanks to the downward trendline of his test results and encouragement from peers to try.
Bottom line: I wasn’t ready to get access to my child’s medical record until I WAS ready. I wasn’t ready to give my child the choice to challenge a food allergy until I WAS ready. But let nobody stand in my way when I’m ready. That, to me, is why everyone should care about health data access and interoperability.
Image: Peas, by Dayna McIsaac on Flickr.
Why peas? Because my kid challenged green peas this week and won. Meaning, he sat in an exam room and slowly ate five increasingly larger servings of peas, with breaks for bites of brownie, while nurses monitored him for a reaction, which never occurred. He said that between eating a soccer-ball-sized pea and 100 pea-sized soccer balls, he would choose the latter. If you don’t get that joke, Google duck-sized horses.
Also: My kid gave me permission to publish this post. I ask every time I write about him.
Couldn’t agree more that being an Engaged and Empowered patient or caregiver has nothing to do with being an Electronically oriented patient. Like all of us I only spend my time dealing with login hassles and clunky websites if it provides me info that I can use.
My record is incomplete and useless. Plus it was blatantly obvious when the medical group was trying to get me to log in for their MU payments. I’ve never logged in again. I also hung up on the pre-op call that wanted me to re-provide answers that they didn’t move when the switched from Cerner to Epic.
OTOH I log into my parents’ at Mayo all the time in order to co-ordinate care when they are elsewhere. We should all have easy access to one comprehensive and accurate EMR … anytime, anywhere but expecting patient use of that record to somehow define engagement in their health is ridiculous. Just because it is easily measured doesn’t make it a useful metric or goal.
Susannah Fox says
Kathryn, thank you! For sharing your story and underlining the fact that some organizations DO get the concept of patient & caregiver access to record and DO deliver on the promise they make to engage with people in ways that make sense.
You may already be aware, but here’s a place where people are sharing their Get My Health Data stories. It’s a project of the National Partnership for Women & Families, a nonprofit based in Washington, DC.
I started to think about how to add ALL the places & people who are collecting evidence of how the health data system is not set up for patients & caregivers (but definitely wired up for corporations to connect) but realized that would be too much for just a comment. Instead, I’ll list a few people I follow when I want to get an infusion of news on this topic:
Grace Cordovano, whose GIF game is strong
Deven McGraw, who works for Ciitizen (disclosure: I’m an advisor)
Harlan Krumholz, MD, who has led (and retweets others’) research into patient data access
Susannah Fox says
Since my blog is my outboard memory, I’m going to share a few new observations and links.
On Jan. 27, Liz Salmi uploaded a video explaining Epic’s “Share Everywhere” program — what’s useful and what falls short of the mark.
She tweeted her conclusions:
– MyChart login (web or mobile app)
CONCLUSIONS (part 1):
✔️ You CAN easily share EVERYWHERE
✔️ Share Everywhere works like “proxy access”
✔️ Share Everywhere is limited to sharing information already available in a person’s MyChart
CONCLUSIONS (part 2)
✔️ NOT helpful if you need to share a deeper level of information (eg, progress notes, imaging, continuity of care document, aka the important stuff)
✔️ Share Everywhere DOES NOT mean you can share everything
✔️ Share Everywhere has a better UX than MyChart
/end of her tweets
This was a wonderful just-in-time news-I-can-use video because I was trying to decide how best to prepare for an upcoming appointment with a new allergist for my son. As I wrote in the post, I was able to get access to his basic test results through Epic’s MyChart system at Hopkins.
But I noticed that there was not one comprehensive view of all the tests over time. I was going to have to create my own spreadsheet and laboriously cut and paste the 100 results (20 allergens X last 5 years) in order to give the new allergist a good overview of his progress. I started working on the spreadsheet and was planning to make my teen do most of the data entry.
Lucky for him, during our second visit to Hopkins the nurse turned her screen toward me and I saw that the industrial-strength Epic (what the clinicians use) had a beautiful longitudinal chart of all his results. I eagerly asked if she could print it for me and voila! I had something useful to share with the new clinical team (even if it was on paper and delivered by sneaker-net).
We just got back from our appointment with the new allergist and it was 100% worth the six-month wait to get in to see him AND 100% worth the trouble to get all those test results in one document. We now have an excellent second opinion and new work plan. Sadly, the new allergist uses Cerner’s EMR system, so of course we can’t share records between their system and Hopkins. Sigh.
Thank goodness the nurse had that and happily shared! Glad for you.
Also, a great example of the problem of putting the care coordination burden on the patient-side … 🙁 SIGH.
From a leadership perspective we have to recognize that we are the 1 or even 0.1% of people able to extract and coordinate the information and professionals we need to get the care we want. Most people lack the expertise, connections and time to pull this off especially since we mainly deal with the health “system” at our most vulnerable.
Furthermore, we can never forget that digital is an enabling technology not a solution in and of itself. Information liquidity and use-ability is what matters for patients and healthcare. Measuring how many patients access their data electronically is a poor metric for the bigger goal.
Dave deBronkart says
Thank you for citing that weird comment that declared me an outlier in ways I’m not. No surprise that the cynic didn’t reply to my questions. Thanks for saying I was polite but pointed.
I try to avoid using links in comments because they make you do extra work but – your entirely valid mention of the burden of collecting those numbers into a spreadsheet instantly evoked this photo of Kristina Sheridan’s dining table, with an 18″ pile of printouts. https://twitter.com/ePatientDave/status/1224466883220471809
Given their daughter’s horrific illness (30 docs, 15 diagnoses), she & her husband typed all of that into their own spreadsheet.
The data was in different computers, but instead of exporting it, the providers converted it all to PDFs and printed them! For the Sheridans to turn back into computerized data. (Which, as the video story tells, ultimately led to the daughter recovering.) https://www.facebook.com/HIMSSpage/videos/10156113497658334/
This is precisely the sort of burden the open-source FHIR standard for health data interoperability is intended to solve. It won’t be an instant fix, but the fix will be enabled as it becomes possible for the data to start flowing out into the world, where apps can be developed to make it pretty and useful like me.
Dave deBronkart says
Some worthy (IMO) additions from Liz’s great Share Everywhere thread (I’m so glad you snagged it here) – the thread starts here
– “Share” is a strange word for it, since it doesn’t let you download it or send it anywhere: you can only look at it, like a Skype screenshare. (Peter Elias MD commented that a person could starve to death if people “shared” their food in this sense.)
– You can’t even print it – it’s programmed to print blanks. (In short, the data stays exclusively in the control of the one who already holds it.)
– The share token is only good for 60 minutes, then the view closes and you need a new one.
– She can’t limit what’s shared – it’s everything she sees in the portal, or nothing
Others in the thread say virtually everything in Epic features is infinitely configurable, so perhaps these constraints are the doing of EVERY EPIC SYSTEM ANYONE ON TWITTER HAS EVER TALKED ABOUT, because we haven’t had anyone show up yet saying they don’t have the problem 🙂
Here’s hoping for patients and families being able to get the information they need!
Dave deBronkart says
Susannah, now that the final rules are out regarding FHIR APIs for standards-based interoperability, I wonder if you might take a look at this short thread on the FHIR chat board, about your post here. https://chat.fhir.org/#narrow/stream/179262-patient-empowerment/topic/Next.20user.20story.20-.20why.20we're.20doing.20this/near/187313206 People were responding with thoughts on what should supposedly be available to you now, re the graphing, if Hopkins had all available features activated (which I imagine would require them paying extra fees, but I don’t know).
I’m sure you’re entirely aware that the anticipated future, with these rules, is that you’ll be able to pick an app and collect his data from everywhere (actual everywhere, not Epic’s “everywhere Epic” definition) and graph it however you like, just like Mint.com for money.
Susannah Fox says